Posts Tagged ‘fibromyalgia’

dogkisses for Roscoe

I’ve been trying to publish a post in this blog for several months or more, but after such a long time away from writing, the endeavor is challenging. 

An honorable mention of Ruthie Mae, a wonderful dog, who crossed the Rainbow Bridge in 2014 and now lives in my memories, feels like a good place to start.

Ruthie named this blog, “dogkisses,” with slight little kisses on my arm each time I reached for her bag of food.  She was forever a tender heart.  So sensitive.  So sweet.  Ruthie’s kisses felt like snowflakes melting on my skin.

Not long after Ruthie passed, my late friend, Laurie, a former fellow blogger who lived with chronic illness, also passed away. 

I was sad.  I also had to move.  Again.  Life has been hard. 

My writer’s voice seemed to have vanished for a while, but after settling into a new apartment, which meant that I could finally sleep, I gradually found myself making notes on random sheets of paper.

Also during my online absence, the bond I’ve always had with my blog and the blogging community as well, never abandoned my mind or heart, which I think is pretty cool. 

Aside from the logistics of moving and an extreme backlash of severe pain from fibromyalgia, during and after my son and I moved two apartments, twice, I became exhausted. Utterly exhausted.  

There is a lot I could say about the past two years and what led to my long absence, but that would take a while and more energy than I have today.

For now, I’d like to introduce you to my new and most special friend, Roscoe!  He’s a beautiful dog.  I don’t have many photos uploaded to this computer yet, but soon I’ll show you his beautiful hound-dog spots and multi-color coat. 

img_8452

No Words for this Face!

I’m pretty sure Roscoe is a mix of German Shorthaired Pointer and Bluetick Coonhound.  His face reminds me of a Husky.  His eyes are an unusual green.  He has wonderful long legs, enabling him to run fast and climb high too!  He’s a thin guy, but some of us just can’t catch a pound or two for long. 

As I write, Roscoe reminds me only of a hound dog.  Whining all the time 😉

Roscoe and I have had a truly amazing journey together since we met at a rural shelter in April, 2016.  I hope to soon tell you about our adventures and for various reasons, a few several misadventures as well.

With luck and determination, I shall return soon.  Fingers crossed.  Thanks for visiting dogkisses!

Cheers!

Rembering Laurie ~ Your Spirit Walks With Me

spirit sisters sunset

Three Sisters in Spirit

I imagined us three, “Spirit Sisters,” as we had once and forever declared ourselves, and our beloved young Rhia too, gathering together on top of Ash’s blue mountain and also, in Georgetown, drinking decadent hot beverages by the river.

I thought about our time together and what we would do.  I wasn’t sure.  We can never be sure of much when fibromyalgia is part of the equation.

A new pair of shoes seemed right for such a special occasion.  I was going to meet Ash and Laurie!

I thought perhaps Ash might not be well enough for traveling away from home, which influenced the shoes I bought.

I chose the shoes with both my spirit sisters in mind.

Strong and sturdy, with a hint of flair.

“I’m a city girl,” Laurie had written to us about where we should have our gathering.

Thinking of our city-loving sister in the midst of wooded and wild nature made me smile.  I suspected the same was true for our mountain-dwelling sister, Ash.

The shoes stayed in the box for at least a year.

Every time I wore the shoes, I thought of the day I would get to meet Ash and Laurie.  I took good care of my new shoes.

I can barely stand the truth, which is that our slumber party will never happen.

Laurie will never visit my blog again, although, there will always be a place here where her spirit lives.  She will never call me again, tenderly reaching out to me.

“Michelle,” she said, in the softest voice.

“This is your sister, Laurie.  I’m here for you sweetie.”

The sound of her voice now whispers in my mind.

A few months back, I started thinking more often of calling Laurie.  I was planning to tell her how much she meant to me, but I was too late.  Laurie became ill and didn’t recover.

Interacting with Nature, in my shiny black shoes!

Slumber Party Shoes 

 

Laurie was dear to me, and she loved me.  I loved her too.

I didn’t get to say goodbye.  I wanted to call her when she was in the hospital, but I couldn’t because she was sedated.  I wanted so much to communicate with her.

I admired Laurie.  She was smart, a good mother and a great writer.  I was proud to have her visit my blog and give me compliments.

Laurie wrote beautifully at Hibernationnow’s Blog.

Her last post was a Haiku titled, “Play.”  Below is taken from that post.

“Play life’s chances, free
ask questions, be bold, stunning
Roar, grin, like tiger.”

Laurie left us too soon.

Sweet Laurie ~ May You Rest in Peace

Freedom on wheels

magic is in the movement

The story I wrote about my having been confined to a wheelchair at age three was mostly true.  In this post, I’m going to tell you the whole truth and a little bit more.

I was supposed to tell 4 bold-face lies as part of this writing project, but I told more truth than lies.

Below is a copy of my story.   I underlined the parts that are NOT true.   The whole truth is in blue.

I was confined to a wheelchair, as a result of a childhood bone disease when I was a toddler.  The doctors told my mother I might never walk again.  I hated that chair! My brother, who is ten years older than me, used to take me and my little chair on wheels to the top of our steep road, which was deep in the mountains.  My two older sisters would stand at the top of the road, holding my chair, with me in it of course, until my brother made it to the bottom.  He would count to some number, which was their clue to let me go.  I would fly down that mountain in my little chair!  It was great fun!  The best I can remember, my brother always caught me.  My mother didn’t mind this game. I wasn’t happy the day I put my foot on the floor and was able to walk again because I had to give up my little flying chair.

The truth:

“A little doll’s chair,” is what my mother says the wheelchair looked like.  “It was just so small.   It didn’t look like it was for a person.”

I had Kohler disease, which is a rare childhood bone disease.  It attacked my ankle bone when I was three years old.  The doctors did tell my mother I may never walk again, but they also told her that it could go away as mysteriously as it had appeared.

I didn’t hate the wheelchair.  I’m pretty sure I loved it.  My mother says that I had crawled around for several weeks before she, “put her foot down,” and demanded that I be taken to the nearest hospital for x-rays.

Putting weight on my foot was intolerable.  The little chair gave me freedom to go outside and play.  At three years old, I guess you live in the moment.  I was too young to understand what never being able to walk again meant.   I was also too young to know the danger of flying down that road, but then sometimes, our memories play tricks on us.

About ten years ago, my mother and I visited the place we lived when I was in that wheelchair.  There was a housing complex with relatively small one story dwellings that was turned into offices for the Juvenile boys home.  My dad worked there and we had lived in the complex, which was for the employees and their families.

Mother and I were both a bit shocked.  The metal fence surrounding the property surprised her.  It was one of those tall fences with thick rolls of barbed-wire on top.  The place hadn’t been fenced in when we lived there.

I remembered the houses being massive with tall and wide dark windows.

“There’s our house,” Mother said.  There weren’t any big houses and the windows were those small rectangular ones you see in beach houses.

I remembered front porch being high up off the ground.  I sat on the steps every day, weather permitting, with my three year-old boyfriend, talking and waiting for the school bus to drop off my older siblings.  I remember being happy when he was there.  We were the best of friends and had terrific conversations about life.

There were only two steps, very close to the ground.  I couldn’t believe how much bigger things were in my memory than they were in reality.

I looked for the steep road where I took the wheelchair flights.  Mother pointed out our road.

“That’s it!”  I was completely astonished.  It was indeed a hill, but didn’t measure up by any means to the one I recalled.

I told her about flying down the mountain road.  She says she didn’t know anything about that.  I sure remember it.  My sisters say they remember too, but oddly, my brother doesn’t and he’s the oldest.  I think he forgot many things he did to his younger sisters.  Like the time he put me in a garbage can and rolled me into the road, but that was later and it was a country road.

I remember clearly the day I put my foot on the floor, which I did every morning, and it didn’t hurt anymore.  The pain was gone!  The bone disease went away just like the doctors said it might.

I didn’t mind giving up the little chair, but I did think I should get to keep it for a souvenir.  I remember wanting it.  Mother says she didn’t think I needed it and donated it to another family.

My ensuing enthusiasm for using my legs was grand.  At age five, I led a large marching band in the Christmas parade because the band leader said I was, “the best little marcher they ever had!”  I took jazz and modern dance classes, but then we moved to the country.  Dancing the way I had learned would have been considered a sin.  This disappointed me, but I soon discovered bluegrass and clogging, the latter of which was a required class in the elementary school I attended.

I didn’t have a bicycle though.  I’d had one when I was five, but then my brother got involved.  He let go of my bike before I learned to ride and I had a bad accident.  I was hurt pretty badly.  I heard my dad ask my mother if I would still be able to have babies.  I was confused.  She told him to shut up and get the car.

Because of that accident, my dad wouldn’t let me get near a bicycle for years, even though my brother always had one.  My two sisters never wanted one, which I always thought was weird and it didn’t help me when I pleaded for my own.  Finally, my dad gave in on my thirteenth birthday.

We went to the local bicycle shop, which was also an auto-parts and lawn-mower shop.  Everyone there knew my dad.  I’d been there with him plenty of times and they all knew I’d been begging for a bicycle for a long time.  I was often invited inside the owner’s house next door and his wife would give me milk and homemade cookies.  I loved her cookies and she made them the day I got my new bicycle.  It was a great day.  My dad let me ride it home, which was less than half a mile away.  You could throw a rock from there to our back door.

I loved that bicycle.  I could ride it fifty miles without thinking a thing about it and I did, often.  There’s a long story about what happened to that bike, but it is one sad story, so I won’t tell it here.

I grew up, had a son and bought us both bicycles when he was three years old.

His was a tricycle, but he begged me to take those two extra wheels off.  “Your bike doesn’t have them Mommy,” he said.

We took the wheels off, but I had a person at each end and several in the middle to catch him if he fell.  He did fall, but he didn’t have far to go and it was in the soft grass.  He didn’t get hurt.  He got up as fast as he could, before any of us could get to him and jumped back on the bicycle.  It was very funny.  I remember him looking back at us as he rushed to pick that little bicycle off the ground.  He never used those extra wheels and we had years worth of fun riding together.  We still enjoy riding together.  I like that.

I can’t go cycling like I could before being struck with Chronic Fatigue Syndrome or fibromyalgia.

However, I do have a fun bicycle.  I call it my magic little bike.  It brings out the best in me when I ride it.   I absolutely love moving and feeling the wind on my face.  That’s part of the magic.  Being able to move without pain.  (The trick to that is being on a flat road.)

My little bike also has pink and white streamers and an awesome bell!

Occasionally, I’ll still take my hands off the handle bars and hold them in the air.  I like that too.

Thanks for visiting Dogkisses’s blog!


Will Return…

Life and Health, one and the same...Life and Fatigue are one and the same lately, along with a large dose of pain.  I take leave, but I shall return when more rested.  Hopefully sooner rather than later.

As always, thanks for visiting Dogkisses’s blog.

Image of clock via IconDoIt, The blog.

Pain in fibromyalgia

Grouse Feathers bring good medicine

A personal experience of living with persistent long-term pain

I’m aware of pain every moment.  A kind of pain that without medication is absolutely unbearable.  A kind of pain that is hard to describe.  It’s persistent, invasive and all-encompassing.  It isn’t only muscle or joint pain, but feels like every cell in my body hurts and is crying out pain.  Sometimes I feel like I’m on fire from the inside out.

Sometimes breathing feels like I have broken ribs and knives are sticking in my heart and lungs.   This kind of pain scares me.  Doctors believe it’s the tissue around my chest cavity that causes this particular pain, which they say is due to fibromyalgia.

I live with pain that the doctors say may very well continue the rest of my life.  I’m only forty-six.  I have severe fibromyalgia and Chronic Fatigue Syndrome.  I also have other conditions that cause pain, but in comparison are easily managed.

I’ve lived with severe pain every day for about seven years.  I’ve lived with intermittent pain from various conditions throughout my life, but fibromyalgia pain is the worst, both because of the intensity and chronicity.

I wake up every morning to pain, usually a moderate level, other times severe.  I always have some level of pain.  Sometimes the pain has been so severe that after taking enough pain medication to manage it, I’ve been left in a state of mental shock from the experience of intense widespread pain.

Sometimes I wake up crying.  Other times it’s the first thing I do.  I’ve cried myself to sleep plenty of nights.  It’s not only the pain that I cry over, but also the ongoing battle to manage and accept it.  I cry because pain intrudes upon every area of who I am and how I live my life.  Most of the time crying helps.  A good cry can be a positive experience.

Sometimes I have severe muscle spasms that take over my days, my nights and my life until they go away.  Hurting that bad wears me out physically, mentally and emotionally.  I can’t take muscle relaxers and narcotics don’t help spasms.  Spasms are completely debilitating.  They started a couple of years ago and each time they’ve been worse.  With a neck spasm I can’t move my head and the pain is off the scales – emergency room pain.

Sometimes I think about what doesn’t hurt.  My nose doesn’t usually hurt.

I don’t think I could live with the kind of pain I’ve experienced without medication.   I once seriously thought that I would have to tell my family it was not humane to expect me to live anymore.  I had decided during an excruciatingly painful camping trip that I could not take the kind of pain I was in and had been living with.  I had sat up all night in my tent thinking about it.

I was with my two dogs on top of a beautiful mountain.  I thought of my son and my mother.  My family.  I cried and sat there until sunrise, experiencing and feeling the enormous pain.

Fortunately, when I returned home I went to a doctor who began treating my pain.  That was five years ago.

It may be that pain will drive you crazy after a while if you don’t have a way to treat it.

Pain and managing it is as much a part of me and my life as is anything and feels like it may be the most important part.   I feel sure I’d go into shock and possibly have a heart-attack without pain medication.  That scares me.

For the most part I’m able to manage pain with medication.  I’m deeply grateful to have medication.  I’m normally able to keep the level of pain around a three on a scale of one to ten when my medication is working well, which includes not being groggy.  A level three or four is well-managed pain.

As a result of pain medication, I don’t have as many episodes as I used to of the kind of pain that feels like I can’t breathe or that I’ll have to go to the ER.  Sometimes I miss a dose and fall asleep.  That’s usually when I wake up with my entire body on fire and my chest cavity feeling like a mule kicked it.

I get scared of losing my doctor.  I’m afraid I would get a new doctor who wouldn’t understand how severe my pain is, like five years ago when many doctors didn’t believe in fibromyalgia.  They didn’t know what fibromyalgia was and would often blame it on psychological factors, such as stress or depression or they called it a, “trash-can diagnosis.”

I’ve tried nearly every non-narcotic pain reliever; including most of the antidepressants used to treat pain, along with the anti-seizure drugs Neurontin and Lyrica, but absolutely could not tolerate the side-effects.  I eventually began treatment with a tried and true pain reliever, which treats the pain with relatively few side-effects.

Several months ago stress increased in my life and so did the pain.  Any type of stress directly, and these days immediately, causes fibromyalgia pain to get worse.

I also went on another camping trip that physically set me back.  I lifted logs to have a fire.  Big heavy wonderful logs of Locust wood that I kept burning for four nights and five days right up ‘til the last few hours of packing to leave.  I did plenty I shouldn’t have done.  I hadn’t been camping since that one trip almost five years ago.

Being able to camp is something fibromyalgia has taken from me but evidently, I rebelled.   It didn’t work out too well.

As a result of high levels of stress and the killer camping trip, I recently had to increase my dosage of pain medication.  I thought the aftermath of pain from camping, which was almost four months ago would go away, but it never did.

Pain is depressing.  Knowing that I might have to take pain medication for the rest of my life is scary.  I get scared of getting old because I wonder how an older body will tolerate this pain or the side-effects of medications.   I wonder how many times in my life I will have to increase the dose of pain medication.  There are only so many times a person can do this in one lifetime.  It’s all scary.

Personally one of the most difficult aspects of living with fibromyalgia pain is that it’s invisible.  The same is true with medical fatigue.   People will question and some will outright attack your character.  Some people question your intelligence and your honesty, along with your motivation to seek out disability benefits when the pain and fatigue is severe.

Personally, it has been my blood relatives who have hurt me the most.  I’m not sure what their intentions have been or what they gain from not believing that I have pain that requires treatment.  They certainly don’t understand what Chronic Fatigue Syndrome entails.

I don’t know where the silver lining in the cloud is.  I’d rather not have pain than to learn the lessons pain teaches, if that’s where the silver lining is.

Pain is humbling.  It teaches that the human body is what it is –human.

Pain begs me to take better care of myself and to care more about myself.

I grew up hearing the saying, “What doesn’t kill you makes you stronger.”  I wonder.  I’m darn tired and worn out.  I think I would be stronger if I hadn’t had ongoing experiences that felt like they might kill me.

I’m not too good at finding the silver lining in a cloud of pain.

I’m better at finding ways to cope.  Little things that make me feel better like hanging out with my dogs.  I love to rub the silky coat my young dog has.  She’s the softest animal I’ve ever touched.  She’s my tender heart.

My other dog is really my son’s dog but lives with me.  He and I have always had a strong connection so we’re pretty close pals nowadays.  I feel like his grandma.  He’s a stoic fellow, but once in a while he’ll decide to give me one little kiss, just one and it’s always a surprise, like when I come home after having been out for a while.

My dogs give me joy and really do comfort my heart when all else seems lost or out of control.  Dogs rule.  They never argue and certainly never are they mean, at least mine aren’t.  Dogs love you unconditionally, as long as you feed them, so that’s pretty cool with me.

Intentionally experiencing gratitude helps me ease anxiety or depression.

I think about the basic necessities in life –shelter, clothing, food, and sometimes little luxuries too.  I think about things I’m grateful for because it actually does make a little difference in the way I feel.  Some days it makes a huge difference.

As I write, the worst part of chronic pain is that it hurts today and I know it will tomorrow.  The best part of having to live with chronic pain is that I have access to good medical care and medication to treat it.

Maybe one day I won’t have such severe pain.  Maybe one day I won’t have fibromyalgia.  Maybe I’ll discover new or different ways of treatment that works.  One can hope because anything is possible.  Well, most anything.

Image via “The Graphics Fairy” — “Feathers -Autumn Display”

You cry fibromyalgia

peace prevailed

Peace of Home

The car was parked unusually close to my apartment.  It was foggy and I didn’t recognize the passengers.  I had to take my dogs out.  I usually take both dogs, but I only took one this time.  Maybe I was subconsciously preparing for the fight or flight response.  I surely can’t respond with two big strong dogs pulling on me.

They were still sitting in the car when I came back to get my other dog.  I said hello and the young woman in the driver’s seat returned my greeting.  The subject of my neighbor quickly came up.   He’s been harassing me for two months.

I thought she was being nice but then she cursed.  I asked her to repeat herself.  She verbally insulted me.

I have a rebellious nature that doesn’t always serve me well.  I responded, but not by taking flight, which I should have done.  I told her what I thought of my neighbor and that’s when he got out of the car.

He had a strange hat on and didn’t look like himself.  She got out right after he did.  He was clearly more intoxicated than I’d ever seen him, which must have taken an incredible amount of alcohol.  He walked around the car towards me.  He began his attack with a vulgar one-man show.

I was stunned but not too surprised by my neighbor’s behavior.   It was a clear view of what I had felt during the times I had tried interacting with him.   There had been a constant current of contempt seeping from his pores and he reveled in it like the insects in the sticky sweet sap from the wounded oak tree in my yard this past summer.

Being around him each time had left me raw and open, as if like the oak, something had struck a part of my foundation.

I made brief eye contact with the young woman.  We had both stood silently while he acted out.

“Why don’t you try talking to him?” she asked me.

Her remark actually surprised me more than the neighbor’s behavior had.

“You see the kind of person he is?” I asked her.  Obviously she didn’t.

“He’s really a good guy,” she said.

I guess she’s an optimist.  Maybe she believes she has magic powers that will reveal this “good guy.”

His behavior over the past two months had led to eviction papers but he blamed me.

I guess I was being the optimist too because I thought if I asked him one more time to be quiet, especially in front of a woman he wanted to impress, that maybe he would listen.  I was wrong.

“Why don’t you just leave me alone?  I need sleep.  I have…’’  I was going to say fibromyalgia, but he interrupted and began an outlandish verbal bashing.

“Oh and what do you say?” he shouted gloriously.  “You say you have fii bro my algia!  And what does fii bro my algia mean!  That you hurrt!”  He drew out the words fibromyalgia and hurt with great scorn.

He shouted fibromyalgia several more times.  Amazingly he pronounced it correctly, but then he had told me several times about having been the smartest student in his high school English department.  I’d found this curious because he reminded me of it every time I mentioned my writing.  It seemed like he needed to always make it understood between us that he was smarter and better than me.

This is all much clearer to me now.  Now that it’s all over and I can hear myself think again.  For a while, all I heard every day and night was him.

He looked up at the sky continuing to shout out, “Oh I hurt! I hurt! I hurt!”

“Oh! Oh! Oh!” he kept on.  He started physically mocking a person in pain by holding his body in ways to act like he was hurting.  He included sexual innuendos while he was carrying on.  It was a crude and ugly scene.

I can’t say why I stood there witnessing this behavior as long as I did, although I think it only lasted a short time.  Responding to a sudden outburst of verbal abuse and being bullied like I was isn’t something I’m well practiced at doing.

“You’re a c**t,” he said.  There it was.  Hatred that I knew was there.  I’m not sure if this surprised me or not.  My memory of the event is like one moment in time.  I remember more how I felt afterward than I do about when it was happening.

He briefly paced around in a small circle, obviously spewing with anger.  He called me that name again.  His friend looked a little ashamed, but she didn’t interrupt him.

I wondered how could she be okay with what we both saw.  I failed to remember that she’s looking beyond his behavior at some fairy tale in the sky where he’s that, “good guy.”

“I work every day,” I said.  I knew nothing I could say would mean anything to him, drunk or sober, but I’d said it anyway.

“Oh yeah, and what do you do!  You cry the fibromyalgia blues!  You sit home on you’re a** and cry those fibromyalgia blues, and oh how it hurts.”  He tried to sing but was way too intoxicated.  “I hurt, I hurt, oh I hurt,” he shouted, still looking at the sky.  I don’t know why I so clearly remember him looking at the sky while he ranted and raged.

I’ve never cried any fibromyalgia blues to that guy.  I did cry twice around him while attempting a friendship, but my tears had nothing to do with fibromyalgia.  He was by far one of the rudest people I’ve ever been around and twice he insulted me in ways that caused me to eventually stop speaking to him.   The few times I visited him felt like I had entered his personal war zone.  Like he took a break from shooting arrows in his backyard and invited me over for some easy shots.

He continued with his drunken spew of contempt standing there in front of my porch.  “You sit and cry how you hurt so you can get a check!”  He emphasized the word check with a high note.  Then of course he mentioned tax dollars.

Some people who claim patriotism don’t seem interested in the big picture of what helps shape our country into a place of opportunity and freedom — for every citizen.

In America we can better our lives, all of us, not just the able-bodied working folks.  We can be anything we want to be.  We strive to make sure that every child receives an education.  We have social aid and many government programs to help needy children, and their families.   We also help our disabled and elderly citizens.   At least, those are American ideals.

People who don’t understand disability unless there is a wheelchair or a death-bed in sight can be cruel, like my neighbor.  Some people will automatically assume a person without these visible affirmations of a handicap or illness is a fraud.

I continued trying to defend myself, which was an odd experience.   I didn’t much care what this neighbor thinks of me.  The words coming out of my mouth were like dampened cries from another place.

“I paid taxes.” I said.  I knew it would only make him madder so again, the rebel in me most likely wasn’t serving my best interests, which is ultimately to have peace in my life.  Obviously this means walking away from certain people or situations.

“Yeah.  I’m sure they took a little out of your check,” he stammered.

“You are nothing,” he said.   He stomped out his cigarette on the ground.  “Nothing,” he repeated.

I remember this part clearly.  Finally, he began walking away.

“I’m not nothing,” I said quietly.  I almost cried but stopped myself.  I looked into the young woman’s eyes again wondering, I guess, what she thought of her friend.

“I know that,” she said.   She didn’t look pleased about her friend’s behavior, but she was looking for the sunny side of a burnt fried egg.

“You ain’t nothing,” he stopped to say once more before going inside his apartment.

“I’m better than you,” I said calmly, although that response surprised me.

“Ohhh yeah!  Oh you are sooo good aren’t you!”

“Yes.  I am.”  I said.  “You’ll be leaving soon,” I added.  I shut my door.

That wasn’t his last performance but he’s gone now.  It was a long two months.

The short-lived relationship I had with this person was an eye-opening experience for me.  I thought I’d be able to spot a narcissist anywhere and easily.

Spotting one and ducking one are different skills.

I don’t know how narcissistic my former neighbor is, but he sure had a mighty large dose of himself.  Arrogance and a sense of superiority over most of humanity were traits he proudly displayed.  I didn’t know what to think.  One day I asked him why he invited me over if he didn’t like anything I ever said and put me down all the time.  He said I took things wrong, adding that his friends were all fine with his ways.

I guess there are many reasons a person criticizes others, particularly when it is done with great passion.

“What you see is what you get,” I remember saying to my neighbor months ago.

I finally decided that people who spend a lot of time hiding think everyone else is doing it too, but that’s just a personal theory.

From now on, I’m going to follow Leslie’s turn on this phrase, “What I see is what you get.” which she talks about in a recent blog post on malignant narcissists.

I forgot to keep the light in the watchtower glowing.  I forgot that when people prove they are mean and rude to get away from them if I can, instead of trying to figure out if I imagined them being mean and rude.  I forgot again to listen to myself.  I keep doing that, but then forgetting does remind me to remember.

Thank you for visiting my blog.

This post represents several things to me personally, the best of which, I guess, is what it was like being bullied, although I didn’t write about the aftermath of that evening.  It was as hard or harder than standing there witnessing my neighbor’s abuse.

It’s also an extreme example of stigma and disbelief around invisible illness.  Although this person was intoxicated, I’ve had the stones thrown at me for looking fine and receiving disability benefits.

It’s about learning to walk away, right away, from people who behave destructively, especially when I am the target.  As with most of my posts, it seems to be about listening to myself, or not, depending on how you look at it.  I prefer to believe that I’ll eventually get wise(r?).

Also, my friend CJ, who has a great blog about living with fibromyalgia, has repeatedly encouraged me to keep on writing.  Write anything she said.  In that respect, this post speaks to my rather frequent unfortunate entanglements.

With all that said, I’m happy to have my personal space back, my peace of home and am rather looking forward to the rest of this beautiful season.

Peace



The Elusive Fence

“Everything God creates is good, and God made sex, so therefore, sex, when done well, is divine.” Amy Wolf

“I’m a FenceSitter,” I told him, as I was finishing, rather nervously, my third glass of water. Our eyes met but I’m not so quick when it comes to what I suspect is fairly easily discernible to most folks.  I’m usually the last person in a group, besides one of my sisters, to get a joke.  People’s witty remarks come slowly to me.  I think way too much.  Our conversation continued without my having taken note of an elusive imploring look in his eyes.

“What do you mean?” he asked as he sat there,  seemingly content and happy in one of the handmade chair-stools at the large wooden table in his kitchen.

“Sometimes I don’t know what to do,” and I told him a little about what being a FenceSitter means to me.  I also told him the story behind the wonderful image.  He still hadn’t said anything as to the irony of what I was describing to him.

He grabbed another beer.  “Just do whatever you want to do,” he said with an ease of mind that may accompany a carefree lifestyle with minimal responsibilities.

I needed to decide, I thought.  In reality, I’d already decided on what I was going to do with my evening.  The navy blue shirt he was still pulling over his head when I opened my door felt like a sudden hard rain that comes while you’re driving,  causing you to pull over to the side and wait.

“I guess I don’t know what I want,” I responded.  I looked at the drawings on the large table, along with initials and short sentences.  I imagined the people who had sat there most likely inspired by alcohol, the main source of which being Pabst Blue Ribbon and much of the time, Johnny Cash’s music.

“Well, that’s no good.  Let me get you another glass of water,” he said.   His apartment was quieter than usual for a weekend.  He said his roommate was gone.  I asked if he had plans for the evening.

“Nope,” he said, without any hint about what he might like to do or wished he could do, which was a part of my acute but temporary dilemma.  Another part was that when I’d sat down at his table and told him I was on my way out for the evening, he’d said, “You look nice.”  I’d never seen the look on his face that I saw in that moment.   His eyes had only traveled from my hair and face to the crisscrossed straps of my summer dress.  “Very nice,”  he politely added.  He reminded me of a cowboy in an old western movie when he nodded his head in a slight way giving me the impression that his compliment was genuine.   I needed more water.

“I can’t believe I’m this age,” I finally said, as I finished another glass of water with about twenty more minutes behind me.

He smiled.  “Are you saying making decisions doesn’t get any easier when you get older?” he asked.

“Exactly,” I said.  I was no longer sitting but had stood up, taking hold of my handbag and keys, even though it didn’t change the way I felt.   “I mean it ought to be easier by now.  I should know what I want.”  I realized that making decisions were much easier for me when I was younger.  I don’t know when things changed.  I guess when I got sick.

I do know one thing I want and that is to feel good.  I’m tired of being sick and damn tired of pain.  I’m really really tired of it.  I’m tired of feeling like life is passing me by because I’m too weak and fatigued to do the things I wish I could do.  I’m also tired of being indecisive and unsure of myself — sort of unfamiliar in my skin.

“Sometimes being a FenceSitter is hard,” I told him.  Time was passing quickly and I was counting every minute by the clock on his stove.

“Right now you’re sitting at a fence,” he said.   He’d told me earlier that he had built the table out of fence posts.  “How does that feel?” he asked with a  smile on his face.

I finally got it!  My new acquaintance is a FenceBuilder and I was sitting at the FenceTable talking about being a FenceSitter!. I laughed, but only slightly.  I was a little embarrassed that I hadn’t gotten this already.  I was also a bit taken by the irony.

“It feels pretty good,” I responded, and it did, except for my decision-making dilemma that I was creating on my own.  Nature had indeed slowed me down, but things had cleared enough so that I could have moved on towards my original destination.   Instead, I drank more water.  There were many things going on in my mind at once.

My age, being sick all the time, feeling like I’d lost so much time to grief, and last year, to an emotional trauma.  I wanted to live but that was why I’d made an earlier engagement.

“Help me out here,” I asked the FenceBuilder.   “I’m really too tired to drive,” I remarked.  I was sick.  It was true.  In fact, I was barely getting around but felt I’d go crazy if I didn’t get out and away from my home for a while.  I’d been in the bed most of the day with nausea and fatigue.  It had been a bad day.

“Ahh, you’re not too sick,” he responded, and he smiled.  He didn’t believe me.  I could tell.  I saw no use in trying to explain what fibromyalgia or CFS is like.  I did make an attempt at what felt like defending myself.

“I woke up sick.  I really don’t feel good.”

“Then why did you make a plan to go out?”

People don’t understand chronic sickness, surely not when they can’t see it, and even more surely, when the sick person is freshly showered and dressed up a little.  Looking good and being sick don’t mix well in the minds of those who’ve never experienced an everyday battle with illness.

“I just wanted to get out for a while,” I said.  We talked more and I drank more water.  I didn’t know what to make of the feelings I was having.  I wanted to keep my plans, kind of.  I think I wanted my cake and to eat it too, but I wasn’t sure that was the only dynamic happening.  I felt like if I was continuing to sit there with this man, that possibly that was exactly what I really wanted to do.

I honestly didn’t feel like driving by that time and quickly approaching was guilt about getting sidetracked, even if Mother Nature did have a little something to do with it.  The rest was up to me, like keeping my agreements with people, which is important to me.

As the minutes passed we continued enjoying each others company.  I told him the story of me having had two tick-borne illnesses.  I told him I’d been struck with Chronic Fatigue Syndrome after the second one, which was Rocky Mountain Spotted Fever that had lasted over a month before a doctor finally prescribed medication.  “I lost a lot of weight,” I said.  “I barely weighed a hundred pounds.”

“Well you can’t weigh too much more than that now,” he remarked. I realized he was right.  “I carry more than that around on both my shoulders every day,” and he laughed.

Mother Nature again!  I had a hot flash.  He got me another glass of water.  Now I was thinking about his arms and shoulders.  There had been many times I’d seen him arriving home in the heat after a long day of work without his shirt on.  Sometimes I’d wondered if it had been for my benefit but I always brushed it off.  I did however flirt with the young man.

Men flirt with younger women all the time.  Men date younger women all the time.   I’ve never flirted much, but I feel like time isn’t necessarily on my side.  If I’m ever going to know what it feels like to flirt, then I figure I better get to it, so I have, a couple of times.  It felt safe and I must admit, it was fun.  I had no clue that the FenceBuilder might feel the same way I was feeling when I’d seen him cleaning out his truck or meandering around in his yard without his shirt on.  Well, maybe I did have some clues.

I was trying to get more clues by the fourth or fifth glass of water I drank while I sat at the fence-table.  “Well, now I have more things to think about in making my decision, or rather, changing a decision at the last moment,” I said followed by a deep breath I felt like I needed.

“Like what?” he asked, seemingly naive but now, I realize, he most certainly was not.

“Well,  imagining you slinging around hundreds of pounds on your shoulders doesn’t help matters.”

He smiled.  I excused myself.  I needed fresh air.  I had to think about canceling my plans.  I felt pretty bad about it but time had gotten away from me and I guess, I simply couldn’t walk away from the desire to go back to see the FenceBuilder.

I made a phone call changing my plans.  I made a brief trip home discovering a plate of fresh pasta with herbs and chicken in my refrigerator.  A neighbor had cooked it for me and left it while I had been out.  I was starving.  I ate it immediately.  I felt better.  I thought I’d made the right decision.

Arriving back at the FenceTable I accepted a beer, which is pretty unusual for me, but I had a feeling the rest of the evening would be an unusual experience.

I think the FenceBuilder may have used my pain to get closer to my body, but I’m not going to hold it against him.  “Does your shoulders or back hurt?” he asked.

“My entire body hurts when it hurts,” I responded and quickly added, “although it does settle in my shoulders.”

“Would you like a massage?”

I never say yes to this!  “Yes, I would,” I said.

Stress had filled several consecutive days.  Financial worries had been making me nauseated but also disturbing me were my deep concerns about my son.

He has an ACT team who doesn’t do shit and this makes me mad, and stressed!  I am a mother — not a social worker, a doctor, a therapist, a money manager, which are all treatment services the ACT team claims to be providing for my son.  I’ve been doing their job for the best of a year.

After massaging my shoulders,  he casually sat back down in his chair.  Smiling he asked me what I wanted as he opened another beer.

I didn’t think much about my stress for the next twenty-four hours, other than I might pay a price in fatigue and pain.  Much fun was had.  There was nothing confusing about that.

As I write, still fatigued, I’m reminded of my wonderful meeting with a Morgan horse named Candy.  I knew I’d pay a price in pain for the fun lesson I had with her.   My body feels about the same today as it did two days after my lesson with her and I learned some things too.

Riding a horse gives me joy for several weeks afterward.  Horses are good medicine for depression.  I had great fun with the FenceBuilder, but unlike my time riding horses in which I always feel an emotional connection, I was left with somewhat of a wanting feeling.

Something was missing.  I realized it was in my heart.

I missed my best friend who is on another vacation.   I longed for his company all day.  I longed for a feeling of being connected.  I took my younger dog for an early evening walk to a nearby natural butterfly garden.

I thought about how I was feeling.  Embrace this wanting I feel. Know it and feel it. So I did.  It was not such an easy feeling to sit with.

Returning home I snuggled up close to my canine companions.  They are my best friends.  Their sweet eyes revealed their loyalty and love.  I rubbed their soft fur.

Lying in my living room, brightened only by a colorful hanging lamp I recently installed, I saw the light flickering on my cell phone.  My dear friend had sent me a wonderful long text message, which he’d never done before.  He usually emails from his trips away.  His text felt more intimate than the emails.  He shared interesting little details of his trip.  Little things that made such a huge impact on me.  This soothed some the wanting in my heart.

I realized as I embraced the feeling, that I have some really good people in my life.  People who understand I live with pain and sickness.  Not dozens of people, but a few, which is enough.  I was reminded of how much I love these friends.

I learned too that part of why I enjoy riding horses is that they sense how I feel and this is a wonderful connection.   I actually communicated on an emotional level much more with the Morgan, Candy, than I did with the handsome FenceBuilder.

I learned too that FenceBuilders are indeed strong.  I have no doubt in my mind that the man can carry two or three times my weight over his shoulders.

As to being a FenceSitter, well, maybe the years ahead of me will change this some, maybe.  For a short time I was free, like butterflies on a sunny summer day.  As to my decision to return to the handsome FenceBuilder’s FenceTable, accepting a shoulder massage, which I had strongly suspected would lead to more, I have no regrets.